Saturday, March 21, 2015

Different Than I Thought It Would Be


I thought, that the day the doctor told me my kids had a fatal lung disease, would be different.

Actually, I didn't really think about that day at all.  Ever. I thought about that day for other mothers; how they might feel if they heard those words. Those are the words reserved for the ears of another, not mine.

So, I carried on, not really believing anything too serious was wrong with my kids, even feeling guilty some days that they weren't sicker because surely, by all logical standards, they should have been.  People die from this disease dyskeratosis congenita.  Horrible things happen and they die.  My kids were flourishing in the long shadows of this disease.

It was by chance they found the heart and lung problems that divided my world between then and now.  Maybe the increased lung pressure was just a small hole in the heart. Devastating, but patch it and let's get on with living.  Then, it became more puzzling.  Maybe the increased pressure in the heart was just a couple of  lazy valves that were distracted from their timely job.  Funny, how we can wonder away just about anything; everything really.

One minute, a hole in the heart seems like the end of life as we know.  Now, finding out the holes are in his lungs, not his heart...well maybe it really is the end of life as we know it. Funny how we find it so easy to merge from bad to worse without even thinking about the next move.  It just happens.  I can handle 'this', but I can't handle 'that'.  Before you know it, 'that ' is all you have and 'this' seems more like a common cold.

Pulmonary Arteriovenous Malformations.  It rolls off my tongue now.  It once drowned in my throat from the cracks in the ducts of salty tears that threatened to suffocate me.  Pulmonary AVM's is what has become of Dyskeratosis Congenita for my son. It's the one thing you don't want when looking over the smorgasbord of symptom options; akin to a heaping bowl of horseradish.   It's the one thing, they can't fix.  It's the one thing that will take his life.

Here we are, a couple of weeks out from the official news.  Still,  shouldn't it be different than what it is?

He doesn't have cancer.  He doesn't have leukemia.  He doesn't have diabetes and he doesn't even have heart disease.  With any number of diseases diagnosed, comes a lesson, however brief it may be, in dealing with your new diseased life.  There comes a swag bag of pamphlets..."So you have cancer."  Something interesting to read, success stories, inspirational taglines and pink t-shirts proclaiming survivor-ship!  Never a shortage of chin-up adages to help you through the rest of your dreamy day as you stumble through trying to make sense of it all.

Instead, Pulmonary Arteriovenous Malformation has no specific colored ribbon to announce to the world what you're fighting.  There are no pamphlets on the doctor's wall.  No encouraging words.  No treatment options near or far.  No chin-up quotes, nothing interesting or inspiring to read.  Nothing.  Nothing comes with Arteriovenous Malformations.

No doctor that knows anything about it.  No support, no comforting words, no meals on wheels, no options, no education, no parting gifts, no rubber bracelets, no follow up appointments, no hope.

And that...feels different than I thought it would be.

So, here I am, not really sure what comes next.  Do we just wait?  What are we waiting for?  Waiting to die?  Is that what we do now...just wait to die?  Is there some kind of aspirin or something I should be giving him?  Shouldn't I be doing something?  I'm just suppose to sit here and wait and watch?  And wonder?  Wonder when that fateful day will come? Shouldn't someone be coaching us through this?  Shouldn't one doctor send us to another?  Someone with a plan?  There's always a plan when it comes to our health...but this is different.

 Different than I thought it would be.

What does it all mean?   In fact, my son asked me this very question just minutes after hearing the news himself.

What does it mean?

It means you live your life like you've never lived it before.  It means you don't wait to make a difference, or be inspired or to inspire.  It means you act now.  You love now.  You make the moments count.  You raise your heart rate to new heights! Let your breath be taken away by the beauty of tender mercies from God. Do things you've never done before. Take chances but more than anything, be grateful you lived. Be grateful everyday for one more breath as you breathe in life.

That's what it means...and it's different than I thought it would be.

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